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CA Cancer J Clin. Author manuscript; available in PMC 2011 September 1.

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CA Cancer J Clin. 2010 ; 60(5): 317339. doi:10.3322/caac.20081.

Interventions with Family Caregivers of Cancer Patients: MetaAnalysis of Randomized Trials


Laurel L. Northouse, PhD, RN, FAAN, Maria Katapodi, PhD, RN, Lixin Song, PhD, RN, Lingling
Zhang, MA, and Darlene W. Mood, PhD

Abstract

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Family caregivers of cancer patients receive little preparation, information, or support to carry out
their caregiving role. However, their psychosocial needs must be addressed so they can maintain
their own health and provide the best possible care to the patient. The purpose of this article was to
analyze the types of interventions offered to family caregivers of cancer patients, and to determine
the effect of these interventions on various caregiver outcomes. Meta-analysis was used to analyze
data obtained from 29 randomized clinical trials, published from 1983 to March, 2009. Three types
of interventions were offered to caregivers: psychoeducational, skills training, and therapeutic
counseling. Most interventions were delivered jointly to patients and caregivers, but they varied
considerably on dose and duration. The majority of caregivers was female (64%), Caucasian (84%),
and ranged from 18 to 92 years of age (mean 55). Meta-analysis indicated that although these
interventions had small to medium effects, they significantly reduced caregiver burden, improved
caregivers ability to cope, increased their self-efficacy, and improved aspects of their quality of life.
Various intervention characteristics were also examined as potential moderators. Clinicians need to
deliver research-tested interventions to help caregivers and patients cope effectively and maintain
their quality of life.

Keywords
Carcinoma; family caregiver; spouse caregiver; meta-analysis; emotional distress; randomized
controlled trial; quality of life

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Even though family caregivers are the long-term care providers to people with cancer, they
receive little preparation, information, or support to carry out their vital role.1,2 Family
caregivers often are expected to navigate an increasingly complex and fragmented health care
system on their own and to find whatever help that may be available.3 In recent years, the
caregiving responsibilities of family members have increased dramatically, primarily due to
the use of toxic treatments in outpatient settings, the decline in available health care resources,
and the shortage of health care providers. Family caregivers of cancer patients have participated
in a limited number of intervention programs but these programs have focused almost
exclusively on improving patient outcomes (e.g., symptom management, quality of life) with
less attention directed to the needs of family caregivers.4 Family caregivers have psychosocial
needs that must be addressed so they can maintain their own health and provide the best care
possible to the patient.
The purpose of this article was to analyze the findings of randomized clinical trials to
understand the type and efficacy of interventions aimed at the needs of family caregivers of

Corresponding author: Laurel L. Northouse PhD, RN, FAAN, Professor, School of Nursing, University of Michigan, 400 N. Ingalls, Ann
Arbor, Michigan, 48109, phone: 734 615 4016, lnortho@umich.edu.

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cancer patients. Individual studies often have had insufficient power to draw definitive
conclusions. Therefore, meta-analysis was used because it combines data from multiple studies
and then determines a more accurate estimate of the effect of interventions on specific
outcomes.5 We analyzed the type and content of interventions delivered to family caregivers
of cancer patients, and then we examined the effect of these interventions on various family
caregiver outcomes. We also identified some limitations in existing studies, and recommended
directions for future research that could improve care strategies for family caregivers in practice
settings.

Background
A large body of research has documented the effects that cancer can have on the emotional,
social, and physical well-being of family caregivers.1,68 Cancer patients and their family
caregivers react to cancer as one emotional system; 9,10 there is a significant reciprocal
relationship between each persons response to the illness, with family caregivers often
reporting as much emotional distress, anxiety, or depression as patients.1,1113 The advanced
phase of cancer is especially difficult for family caregivers, who sometimes report more
depression than patients themselves.14 However, caregivers seldom use any form of mental
health services to deal with their own depression or emotional distress,1,15 and this puts them
at risk for long-term health problems.

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Cancer can affect the patients and caregivers family and social well-being, especially in areas
related to talking about the illness, sexual well-being, changing family roles and
responsibilities, and maintaining individuals social support systems.16,17 Problems occur
when patients and caregivers hide worries from one another, and avoid talking about sensitive
issues associated with cancer and its treatments. Family caregivers experience role overload
when they take on patients household or family responsibilities, in addition to their own.18,
19 Difficulty communicating and negotiating family roles can hinder patients and caregivers
ability to support one another, can decrease couples intimacy, and have a detrimental effect
on marital and family relationships.16,20,21

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Cancer also can affect the physical well-being of caregivers. While caregivers health status is
initially like the normal population, caregivers often report more problems with fatigue, sleep
disturbances, and impaired cognitive function than non caregivers.1 Over time, caregivers
burden and strain increases.2224 Caregivers physical well-being is at greater risk because
they have little time to rest, engage in fewer self-care behaviors (e.g., exercise), or often fail
to seek medical care for themselves when sick.25,26 Over half of family caregivers have
chronic health problems of their own, such as heart disease, hypertension, and arthritis,27,28
and these health problems can be exacerbated by the stress of caregiving.29,30
Despite the multiple effects of patients illness on family caregivers, little is known about
effective interventions for caregivers to ameliorate these effects. There is need for a critical
analysis of interventions conducted with family caregivers of cancer patients to determine if
the interventions can improve caregivers quality of life, their physical, mental and social wellbeing, and their experiences in caregiving. Previously, five systematic reviews described
interventions conducted with family caregivers of cancer patients, but did not evaluate the
efficacy of interventions on multiple caregiver outcomes.4,3134 This article presents a metaanalysis that examined interventions delivered to family caregivers of cancer patients in
published randomized clinical trials, and their effects on multiple caregiver outcomes.

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Research Method
Identification and selection of studies

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Our literature search was aimed at identifying available research studies that assessed
interventions targeting family caregivers of cancer patients. Several criteria were used to select
eligible studies: 1) the intervention had to involve family caregivers, either alone, or with the
cancer patient; 2) the intervention had to be psychosocially, cognitively, or behaviorally
oriented; and 3) participants had to be randomly assigned to either the intervention or control
arm of the study. Studies involving pediatric cancer patients were excluded because the nature
of the parent-child relationship was likely to add significant heterogeneity to the studies
analyzed. Pharmacological interventions also were excluded because they were not applicable
to the scope of the present meta-analysis. The literature search focused solely on articles
published in peer-reviewed journals to enhance the methodological rigor of the studies
examined and the conclusions drawn about the efficacy of the interventions.

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Studies were identified by searching multiple literature databases including CINAHL, Google
Scholar, ISI Web of Knowledge, PsycINFO, and PubMed. The keywords family caregiver,
cancer patient, spouse, partner, couple, and intervention were used in various
combinations. When the query produced more than 200 titles, searches were further refined
with the terms random assignment or randomization. Queries were limited to those
involving human subjects and English language. Studies published in languages other than
English were excluded due to time and resource limitations. Hand searches of reference lists
of relevant literature reviews were used to complement the computer searches.4,3133
Coding
Each research article was read and analyzed by at least two members of the research team.
Data extraction was recorded on customized tables; disagreements were resolved through
consensus. Since meta-analysis combines data from different instruments that measure similar
variables or outcomes, a conceptual framework was used to organize extracted data in a
meaningful way. The integration of Stress and Coping Theory,35 Cognitive Behavioral
Theory,36 and quality of life frameworks,37,38 guided the classification of interventions and
the findings of the meta-analysis into clinically applicable domains. Extracted data were
initially organized into three domains: Illness Appraisal Factors, Coping Resources, and
Quality of Life; within each domain, data were further categorized into specific intervention
outcomes (see Table 1 for organization of the data).

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When authors used more than one instrument to measure the same outcome, extracted data
were reported from the most relevant instrument, which was determined by consensus of three
of the authors (LN, DM, and MK) after reviewing the wording of the items used in each
instrument. A similar procedure was followed when authors reported findings on multiple
subscales of instruments, rather than on global scores. For calculation of effect sizes we used
outcome data from the experimental and control arm of the study. When studies had more than
one experimental arm, we chose the experimental arm hypothesized by the original authors to
be the most effective. Finally, since some studies assessed intervention outcomes over time,
we organized the extracted data into three time frames: initial follow-up from pre-intervention
(baseline) to 3 months post-intervention (T1), intermediate follow-up from greater than 3
months to 6 months post-intervention (T2), and longer-term follow-up that occurred beyond 6
months post-intervention (T3).
Statistical Analyses
Data were synthesized using meta-analytic methods.39,40 The standard mean difference, or
the effect size between treatment and control groups, was calculated using Hedges g unbiased

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approach (similar to Cohens d statistic41). Calculation of effect sizes was based on means,
standard deviations, difference in mean scores, p-values, and sample sizes of the groups. Data
were statistically pooled by the standard meta-analysis approach, meaning that studies were
weighted by the inverse of the sampling variance. The random effects model was used as a
conservative approach to account for different sources of variation among studies. The Q
statistic was used to assess heterogeneity among studies. A significant Q value indicates lack
of homogeneity of findings among studies.39,40 Several intervention characteristics were
identified and their effects on outcomes were examined. Categorical characteristics were
treated as moderators and intervention effectiveness was compared across subgroups formed
by these moderators. Continuous characteristics were examined as covariates using randomeffect (method of moments) meta-regression. We also assessed publication bias using the
Eggers t-test with significance values based on one-tailed p-values.39,40 Publication bias can
occur because journals are more likely to publish studies with positive results than those with
negative or non significant results, authors are less likely to report null (negative or
inconclusive) outcomes in multi-outcome studies, and studies with small sample sizes need to
detect larger effects to be published than studies with large samples.

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Comprehensive Meta-Analysis V.2 Software42 was used for the statistical analyses.
Statistics reported in this meta-analysis conformed to the PRISMA Statement (Preferred
Reporting Items for Systematic Reviews and Meta-analyses), a guideline for describing metaanalyses of studies that evaluate health care interventions.5,43 Based on conventional
standards, effect sizes of g = 0.20, 0.50, and 0.80 were considered small, medium, and large,
respectively.41

Results
Initial queries identified a total of 403 articles from all databases and search methods.
Comparison of the retrieved titles identified 243 studies that were duplicates; thus, leaving 160
abstracts for further evaluation (see Figure 1 for details). The present meta-analysis is based
on data extracted from 29 studies of randomized clinical trials (RCTs) published between 1983
and March of 2009 that assessed interventions that included family caregivers of cancer
patients.4472 Among the 29 studies, additional data, not published in the reviewed
manuscripts but needed to calculate effect sizes, were requested and received for nine studies.
The majority of studies (27 out of 29) assessed initial outcomes during the first three months
following the intervention. Approximately half (52%) assessed intermediate outcomes, and
approximately one-fourth (24%) assessed longer outcomes.
Characteristics and Content of Interventions for Caregivers

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A content analysis of the experimental arms of the 29 randomized clinical trials included in
this meta-analysis identified 35 primary intervention protocols. The number of intervention
protocols, signified by the symbol k (i.e., k = 35) is greater than the number of studies (N =
29) because six studies had intervention protocols with more than one primary focus. Table 2
describes the type, the content elements, and the mode of delivery of the intervention protocols.
Intervention protocols directed solely to patients are not described in Table 2. Control group
protocols, most of which were some form of Usual Care, also were not described in Table
2.
Classification of InterventionsThe interventions were classified into three major types.
The majority of interventions were Psychoeducational (k = 20; 57.1%), defined as protocols
whose primary focus was to provide information regarding symptom management and other
physical aspects of patient care as well as some attention to the emotional and psychosocial
needs of patients, caregivers, and/or marital or family relationships. Skills Training (k = 9;

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25.7%) was defined as protocols that focused primarily on the development of coping,
communication, and problem-solving skills with some focus on behavior change. The least
frequent type of intervention was Therapeutic Counseling (k = 6; 17.1%) that focused primarily
on the development of a therapeutic relationship to address concerns related to cancer or
caregiving. Thirty-six secondary elements, i.e., content that appeared secondary to the primary
focus, also were coded, to better describe the complexity of some of the intervention protocols.
The most common combinations of primary and secondary elements were those that included
both psychoeducational andskills training, accounting for over two-thirds (68.6%) of all
interventions.
Three measures of dose of intervention were calculated for each protocol (when available).
The first measure was Total Number of Hours, M = 7.5 hours, range = 1.7 to 18 hours; the
second, Total Number of Sessions/Contacts, M = 6.7, range = 2 to 16; and third, Duration of
Intervention, M = 11.5 weeks, range 1.2 to 56 weeks from first to last session. Several studies
had exceptionally long durations because of extended breaks between some sessions. If those
outliers are excluded the average Duration of Intervention drops to 7.8 weeks. Because each
of these measures was variable, the three measures represented independent assessments of
the dose.

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Format of InterventionsNearly two-thirds of the interventions were offered jointly to


cancer patients and their family caregivers (k = 22; 62.9%); just over one-third included only
family caregivers (k = 13; 37.5%). Two of the interventions were delivered to caregivers alone
while parallel protocols were delivered independently to the patients.44,47 Most interventions
were delivered as face-to-face visits (k = 24; 68.6%), with two-thirds provided in the clinical
setting and the remainder in the home. Telephone delivery accounted for one-fifth of the
interventions (k = 7; 20.0%), while group meetings were the least frequent (k = 4; 11.3%).
Face-to-face interventions often included additional contact by phone (k = 16; 66.7%). Two
studies54,61 provided joint face-to-face visits but gave additional attention to the caregivers
through individual phone calls. Nurses delivered the experimental intervention in 52% of the
studies; social workers, 14%; and psychologists, 14%. The remaining 20% were delivered by
various combinations of these professionals.

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Content of InterventionsThe content of the interventions for caregivers were coded into
three broad areas. Patient Caregiving refers to information or skills (e.g., changing a dressing,
emptying an ostomy bag) to help caregivers carry out their caregiving tasks, and was found
in 25 (71.4%) interventions. Marital/Family Care refers to information and skills to help
caregivers or couples to manage family and marital concerns, including communication,
teamwork, and intimate relationships, and was the primary focus in 25 (71.4%) protocols.
Caregiver Self Care refers to information, skills, and support needed by caregivers to manage
their own physical and emotional health needs, gain confidence in their caregiving role,
maintain their social support system, and access resources to ease caregiving burden; these
issues were addressed in 27 (77.1%) of the intervention protocols. It should be noted that the
degree of emphasis given to these content areas within the intervention protocols varied
considerably, from high (i.e., comprising most of the content provided) to low (i.e., accounting
for less than 10% of the content provided).
Characteristics of Caregivers
Across the 29 studies the number of caregivers who were enrolled and completed baseline
assessments ranged from 14 to 329, with a mean sample size of 114 caregivers (median = 91)
(see Table 3). Enrollment rates varied from 13% to 100% in the studies; however, not all of
the studies reported the number of eligible participants who were approached. The average
enrollment rate across studies was 58%. The attrition rate for caregivers ranged from 0.0% to

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69%, with attrition due primarily to patients death. Only a few studies, mainly in palliative
care, and whose intervention included a focus on managing bereavement experiences,
continued to assess caregivers after the patient died. Most of the caregivers were spouses (84%);
the remaining 16% were comprised of adult children, siblings, other family members, or
friends. The average age of adult caregivers was approximately 55 years (range = 18 to 92
years). In three studies, family members under the age of 18 also were included.47,60,72 The
majority of caregivers were female (61%) and Caucasian (84%).
Most studies were comprised of caregivers of patients who had various types of cancer
(heterogeneous) (55 %); the remaining caregivers were from homogeneous patient populations,
i.e., breast cancer (21%), prostate cancer (17%) or lung cancer (7%). Of the studies that reported
patients stage of illness, approximately one-fourth had early-stage cancer, one-third had latestage, and the remaining studies included patients from different stages of disease.
Effect Sizes Obtained for Caregiver Outcomes

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Table 4 presents an overview of study findings for the multiple domains and outcomes assessed.
The table provides the pooled effect sizes for intervention outcomes, 95% Confidence Intervals,
assessment of heterogeneity across studies (Q statistic), and Eggers t-test for publication bias.
Forest plots for each outcome are shown. Forest plots depict the effect sizes calculated for
each study by outcome ( symbol) as well as the overall effect size obtained for the outcome
across studies ( symbol) at each time interval. The Forest plots also indicate whether effects
obtained in each study and across studies favor the control group or the intervention group.
Illness Appraisal Domain
Appraisal of Caregiving Burden: Caregiving burden was conceptualized as: caring as a strain
or demanding activity, an overinvestment, or a negative reaction to activities related to caring
for the patient. Among the 11 studies that assessed caregiving burden during the first three
months following the intervention, the overall effect size was small but significant, g = 0.22.
Effect sizes for the 11 individual studies varied between 0.12 to 0.62. Five studies assessed
caregiving burden between 3 and 6 months following the intervention, and the overall effect
was small and not significant, g = 0.10. Only one study reported on longer outcomes beyond
six months and the effect size was not significant. See Figure 2.

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Appraisal of Caregiving Benefit: Only a few studies addressed the appraisal of caregiving
benefit as an intervention outcome. Caregiving benefit was conceptualized as: caring as an
opportunity for personal growth, as a rewarding experience, as an investment, and as enhancing
ones self-esteem. Among the five studies that examined caregiving benefit during the first
three months following the intervention, the overall effect size was small and not significant,
g = 0.17. Effect sizes among the five individual studies varied between 0.52 to 0.61. However,
based on two studies, interventions had a positive, significant effect on appraisal of caregiving
benefit during 3 and 6 months following the intervention, g = 0.31. A larger but non significant
effect was found beyond 6 months post intervention. See Figure 3.
Information Needs: Only three studies assessed whether the intervention was effective in
addressing caregivers appraisal of their information needs, such as information about cancer
prognosis, survival, and available resources. The number of caregivers was small in these three
studies, and they each reported large effect sizes. The overall effect size was large and
significant, g =1.36. Effect sizes among the individual studies ranged from 0.85 to 1.87. None
of the studies assessed intervention effects beyond three months. See Figure 4.

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Coping Resources Domain

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Coping Strategies: Coping strategies were conceptualized as interventions to enhance coping


behavior either by promoting active coping, such as problem solving, or by reducing ineffective
coping, such as avoidance and denial. Interventions were superior to the usual care in enhancing
coping efforts of caregivers, and this effect appeared to be long lasting. Among the 10 studies
that evaluated changes in coping efforts during the first three months post intervention, the
overall effect size was moderate, but significant, g = 0.47. Effect sizes among individual studies
varied between 0.47 to 1.46. Four studies evaluated changes in coping efforts between 3 and
6 months post-intervention, and the overall effect size was smaller but still significant, g =
0.20. The two studies that evaluated coping efforts beyond 6 months follow-up reported a
persistent moderate effect that was significant, g = 0.35. See Figure 5.
Self-Efficacy: Self-efficacy was conceptualized as the caregivers perceived confidence,
preparation, and/or mastery to provide care and manage patients symptoms. Interventions
were superior to the usual care. Among the eight studies that evaluated self-efficacy during the
first three months post intervention, the overall effect size was small but significant, g = 0.25.
Effect sizes among individual studies varied between 0.13 to 0.93. This positive significant
effect persisted over time despite the fewer number of studies that assessed self-efficacy at
three to six months post intervention, g = 0.20, and beyond 6 months follow-up. See Figure 6.

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Quality of Life Domain


Physical Functioning: Caregivers physical functioning was conceptualized as performance
of self-care behaviors, such as an increase in exercise, participation in recreational activities,
or improvement of their sleep quality. Among the seven studies that assessed caregivers
physical functioning during the first three months following the intervention, the overall effect
size was small and not significant, g = 0.11. Effect sizes among individual studies varied
between 0.06 to 0.80. However, interventions were superior to usual care for improving
caregivers physical functioning between three and six months post intervention with small
but significant effect sizes, g = 0.22, and beyond 6 months follow-up, g = 0.26. See Figure 7.

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Distress and Anxiety: Distress and anxiety was conceptualized as emotional distress, worry,
negative affect or mood. Interventions were superior to usual care in reducing caregivers
distress and anxiety--and the effect appeared to last for at least 12 months. Among the 16 studies
that evaluated changes in mental distress and anxiety during the first three months post
intervention, the overall effect size was small but significant, g = 0.20. Effect sizes among
individual studies varied between 0.18 to 0.51. Eleven studies evaluated changes in mental
distress and anxiety between three and six months post intervention, and the overall effect
remained small and significant, g = 0.16. The six studies that evaluated caregivers mental
distress and anxiety beyond 6 months post intervention reported a persistent small to moderate
significant effect, g = 0.29. See Figure 8.
Depression: Interventions were not successful in reducing caregivers depression. Among the
16 studies that evaluated changes in caregivers depression during the first three months
following the intervention, the overall effect size was small and not significant, g = 0.06. Effect
sizes among individual studies varied between 0.25 to 0.55. Eleven studies evaluated changes
in caregivers depression between three and six months post intervention, and the overall effect
remained small and not significant, g = 0.06. Three studies that evaluated caregivers
depression beyond 6 months follow-up reported a non significant effect, g = 0.03. See Figure
9.
Marital-Family Relationships: Marital-family relationships were conceptualized as marital
or sexual satisfaction, family support, and couple communication. Interventions were superior
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to usual care in improving marital-family relationships, yet this positive effect was not long
lasting. Among the 10 studies that evaluated changes in marital and family relationships during
the first three months following the intervention, the overall effect size was small but
significant, g = 0.20. Effect sizes among individual studies varied between 0.18 to 0.47. Eight
studies evaluated changes in marital-family relationships three to six months post intervention,
but the overall effect was no longer significant, g = 0.13. Five studies that evaluated maritalfamily relationships beyond 6 months follow-up reported a non significant effect, g = 0.04.
See Figure 10.
Social Functioning: Caregivers social functioning was conceptualized as the ability to carry
out domestic and family roles and increased interactions with family members, friends and
peers. Interventions appear to have a delayed effect in improving caregivers social functioning.
Among the four studies that evaluated changes in social functioning in the first three months
post intervention, the overall effect size is non significant, g = 0.14. Effect sizes among
individual studies varied between 0.18 to 0.04. Six studies evaluated changes in social
functioning three to six months post intervention and, although the overall effect was positive,
it was not significant, g = 0.12. The two studies that evaluated social functioning beyond 6
months post intervention reported an overall moderate effect, g = 0.39, that was significant.
See Figure 11.

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Moderator Analyses for Intervention Characteristics


The moderation effects of intervention characteristics were tested on each outcome. Study
characteristics examined were: 1) Intervention Participants (caregivers alone vs. caregivers
with patients); 2) Mode of Delivery (face-to-face vs. phone vs. group vs. mixed); 3) Primary
Content (psychoeducational vs. skills training vs. therapeutic counseling); and 4) Intervention
Dose (total hours, total number of sessions, duration in weeks). Moderators of intervention
outcomes were examined for the initial follow-up after the completion of the intervention when
the number of studies assessed was the largest. Among the 29 studies, the initial follow-up
occurred on average 5.86 weeks after completion of the intervention.

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Table 5 presents intervention characteristics that significantly affected specific outcomes. For
categorical intervention characteristics (e.g., type of participants), Hedges g for a subgroup
refers to the effect of the interventions pooled across all studies with the same characteristic.
A significant and positive coefficient (see asterisk) indicates that intervention was effective
for that subgroup. The significance level of the Q statistic on the overall moderator line denotes
whether there were significant differences in intervention effect sizes between subgroups. For
continuous intervention characteristics (e.g., # of intervention hours), the sign of the coefficient
indicates the direction of the relationship between study effectiveness and intervention dose
level.
Coping was found to be significantly influenced by several intervention characteristics. Studies
employing face-to-face and group intervention delivery yielded better outcomes than those
using mixed methods of intervention delivery. The intervention hours (M = 7.0) and the number
of sessions (M = 5.2 sessions) were both positively and significantly related to the coping
outcome; longer intervention hours and/or more sessions yielded better results in coping. In
contrast, in the case of caregiver burden, depression, and marital-family relationship outcomes,
interventions with more sessions reported significantly more negative (worse) outcomes than
those with fewer sessions did. Finally, interventions that included caregivers alone reported
significantly better outcomes in appraisal of caregiving benefit than interventions that included
both caregivers and cancer patients.

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Discussion
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The present meta-analysis examined the content of 29 randomized clinical trials addressing
needs of family caregivers of cancer patients, and examined the efficacy of these interventions
on different caregiver outcomes. The types of interventions delivered to caregivers in the 29
RCTs were psychoeducational, skills training, and/or therapeutic counseling. Many protocols
were comprehensive in scope and addressed psychoeducational and skills training activities as
primary or secondary goals. The majority of these interventions included content for caregivers
that addressed caring for the patient, maintaining family and marital relationships, and caring
for themselves, suggesting some consensus that these are essential content areas for
interventions offered to caregivers. It should be noted, however, that many of the interventions
were designed to address primarily patient care. Content about caregiver self-care was a
secondary focus provided incidentally or as an afterthought in some patient-focused
interventions. Fewer intervention protocols were designed with a goal of focusing on content
related to caregivers self-care.

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We observed two indicators of intervention quality in the studies reviewed. First, the majority
(86%) included theory-driven intervention protocols, which decreased the likelihood of
isolated or chance findings. There was considerable variability, however, as some studies
mentioned the theory in passing or in generic terms (e.g., cognitive-behavioral approach), while
others indicated specific theories (e.g., Lazarus or Bandura) and demonstrated how the theory
was utilized in the identification of hypotheses, the selection of intervention content, and choice
of outcomes. Second, most studies (75%) instituted ways to examine the fidelity of the
interventions, i.e., the extent to which the designated protocol was delivered by intervention
staff in a consistent manner. Investigators used protocol manuals, intervention logs, taperecorded sessions, and/or independent reviewers to assess or maintain intervention fidelity,
indicating a growing understanding of the importance of adherence to standardized protocols.

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The majority of interventions were delivered jointly to patients and their family caregivers,
suggesting that investigators recognize that both persons are affected by the illness. Only 9 of
the 29 studies focused solely on caregivers by design, and those that did, generally utilized an
individual face-to-face or telephone format. Only two studies conducted caregiver groups, an
approach with potential value for caregivers to interact openly with other caregivers without
the presence of the patient. There was considerable variability in the intervention dose among
protocols, both in the number of sessions (Range = 2 to 12) and duration of interventions (Range
= several days to 18 months). There also was variability regarding the proportion of the intended
dose the caregiver could miss and still be considered an evaluable case. Mode of delivery
and intervention dose appear to be areas that need further evaluation or standardization within
studies; otherwise it is difficult to determine if, or how much of, the dose of the intervention
or mode of delivery affects study outcomes.
One of the most important findings of this meta-analysis was that interventions delivered to
family caregivers of cancer patients had a significant positive effect on multiple outcomes. The
multiple caregiver outcomes exemplify the multifaceted impact of caregiving and point to the
diversity of intervention effects that can be achieved. Caregivers reported better outcomes in
the Illness Appraisal Domain (less caregiving burden, greater caregiving benefit, fewer
information needs), Coping Resources Domain (use of more effective coping strategies, and
higher self-efficacy), and Quality of Life Domain (better physical functioning, less distress and
anxiety, better marital-family relationships, and improved social functioning). Intervention
effects were evident soon after the intervention for many outcomes, but delayed for other
outcomes such as caregiver benefit, physical functioning, and social functioning in longitudinal
studies. These delayed effects may be due to the additional time required for caregivers to make
the necessary changes or adjustments, and to see the improvements on these outcomes as a

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result of their efforts. Positive and sustained intervention effects were found for coping, selfefficacy, and distress/anxiety outcomes across studies and at initial, intermediate, and longterm assessments.
The small to medium effect sizes found for interventions in this meta-analysis were similar to
the effect sizes found for outcomes in other meta-analyses either with family caregivers of
patients with chronic illness,7375 or with cancer patients themselves. For example, prior
meta-analyses that examined the efficacy of psychosocial interventions found an overall
moderate effect on cancer patients quality of life, 76,77 and on cancer patients anxiety.76,
78,79 These findings are comparable to the small to moderate intervention effects we found
on most quality of life outcomes for caregivers in the present meta-analysis.

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Interventions were not effective in reducing caregiver depression. Explanations provided by


individual investigators included low levels of baseline caregiver depression,63 and the high
rate of attrition among depressed caregivers.61 A previous meta-analysis, using all types of
cancer patients, reported that interventions were not effective in reducing cancer patients
depression,78 a finding comparable to the present study. However, another meta-analysis
reported a moderate-to-strong effect in trials assessing depression in breast cancer patients.
76 These conflicting reports could potentially be attributed to the effects of gender and/or type
of cancer. Finally, a prior meta-analysis indicates that interventions that improve coping in
cancer patients appear to be more effective than those that aim to reduce depression in cancer
patients.76 This finding is directly comparable to our findings for depression and for the
positive and sustained outcomes we found in the coping resources domain.

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There are a number of factors that may have contributed to the small to medium effects observed
in the present meta-analysis. Many of the studies we analyzed had small sample sizes (e.g.,
pilot studies) and high attrition rates, causing them either to be underpowered to detect
intervention effects (Type 2 error) or to report inaccurate large effect sizes (publication bias).
40 The only large intervention effect we found was for reducing caregivers need for
information, and the significance of this finding is compromised by a significant Eggers t-test,
which suggests a possible publication bias. However, the meta-analysis from Sorenson et al.
75 also found large effects for improving caregivers ability/knowledge, which implies that
this finding may not be accidental. Interestingly, even though the provision of information was
provided in nearly all of the interventions analyzed in this meta-analysis, very few measured
change in level of knowledge as a specific outcome. In addition, only 24% of the studies
assessed intervention effects beyond six months post intervention, hindering the power to
detect long term or delayed effects. Some studies were conducted with cancer patients and
caregivers during a time when patients were doing well and caregiving demands were low,
leaving little room for improvement in intervention outcomes.46 In some studies caregivers
received fewer intervention sessions than patients (i.e., 3 vs. 6 sessions) or a less targeted
intervention than patients, decreasing the likelihood of detecting intervention effects.44,66
Finally, while interventions improved caregiver outcomes in some studies, they could not cure
the patients disease or stop the disease from progressing, which therefore remained ongoing
threats for the caregiver.
Moderator analyses yielded interesting results. Studies that addressed coping as an outcome
had better results with a higher intervention dose (more intervention hours and more sessions).
Coping behavior was enhanced either by promoting active coping, such as problem solving,
or by reducing ineffective coping, such as avoidance and denial. Thus, the finding that higher
intervention dose yielded better outcomes makes intuitive sense; changing a problematic
coping behavior or enhancing a good coping strategy requires engagement with the task and
changes take time to occur. Interventions delivered in face-to-face or in group meetings yielded
better coping outcomes than those employing a mixed method of intervention delivery. One

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possible explanation for this finding is that in some studies that employed a mixed method of
intervention delivery (F-F and Phone), the face-to-face meetings were focused primarily on
patients needs with the caregiver in attendance, while the phone calls were focused entirely
on the caregiver alone. It is possible that this approach did not allow the patient and the caregiver
to work together as a team and enhance a common coping strategy. In any case, when using a
mixed mode-of-delivery, it is difficult to separate the results attributable to the phone portion
of the intervention from the face-to-face portion as these two approaches are nested in one set
of results.

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Interventions that included only caregivers resulted in more positive appraisal of caregiving
benefit. These interventions were better able to focus on caregivers own needs and gave them
the opportunity to better reflect on the meaning and the importance of, as well as their
confidence in, their caregiving role. The finding that interventions addressing caregiving
burden, depression, and marital-family relationships yielded worse outcomes with higher
number of sessions is more difficult to interpret. Perhaps caregivers experiencing more burden
or more marital-family conflict have difficulty participating in longer interventions because
they take time away from their caregiving tasks or family responsibilities and unintentionally
add to their caregiver stress. It is also possible that more depressed caregivers are more likely
to drop out of longer interventions lessening the effect of the intervention on caregiver
outcomes. Clearly, more research is needed to fully examine the relationship between
intervention length and caregiver outcomes.
Limitations of the study

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First, we did not include studies published in languages other than English, unpublished studies,
dissertations, or abstracts from conference proceedings. On the one hand, including only
published materials ensures that higher quality, peer-reviewed studies were included in the
meta-analysis; on the other hand, excluding unpublished studies is likely to introduce an
upward bias into the size of the effects found, which means that calculated effect sizes are
likely to be larger.40 To address this limitation, we assessed heterogeneity of findings with the
Q statistic and publication bias with the Eggers t-test statistic. Publication bias appeared only
in three outcomes, and may be related to a few studies with smaller sample sizes that assessed
these outcomes. However, the effect sizes we reported are comparable to effect sizes of other
meta-analyses assessing cancer patients outcomes. Second, given the large number of
moderators and the multiple outcomes we tested, we had a high chance of incidental findings
of statistically significant moderators. To account for this bias, we presented and interpreted
moderators that were significant at 0.05 level for an overall outcome and not those that were
significant for a subgroup within a particular outcome. Third, each of the moderators was
examined in separate analyses. We did not assess multiple moderators in one meta-regression
model due to the small/moderate number of studies for each outcome. Finally, we limited our
choice of moderators to characteristics of the interventions rather than characteristics of the
caregivers (i.e., age, gender, education, etc).
Clinical Application of Findings
There are several implications from this meta-analysis for clinicians and other health
professionals working with cancer patients and their family caregivers. First, clinicians need
to recognize that patients and their family caregivers react to cancer as a unit, and as a result,
they both have legitimate needs for help from health professionals. There is general consensus
in the literature that when patients and caregivers are treated simultaneously important
synergies are achieved that contribute to the well-being of each person.9,80 When caregivers
needs are not addressed, their mental and physical health is at risk, and patients are denied the
opportunity to obtain optimal care from a well-prepared family caregiver. Programs of care
directed only to patients are seldom sufficient to meet patients needs because so much of the

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patients care depends on family caregivers. In order to provide optimal comprehensive cancer
care, the care plan must focus on these patient-caregiver units.

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Second, there is clear evidence from this meta-analysis that interventions provided to
caregivers of cancer patients can have many positive effects on important caregiver outcomes.
Even though effects were small to moderate in size, interventions show promise of achieving
clinically significant outcomes. Although interventions did not improve caregivers overall
quality of life, there is evidence that specific components of quality of life were responsive to
these interventions. Interventions significantly reduced caregivers burden, improved their
ability to cope, increased their confidence as caregivers, reduced their anxiety, and improved
marital and family relationships. These interventions produce more prepared, less distressed
caregivers which, in turn, is likely to result in more positive benefits for patients. Our findings
are consistent with reports of interventions targeting caregivers of chronically ill patients with
dementia. Caregivers of dementia patients benefited from enhanced knowledge about the
disease, the caregiving role, and available resources.80 Once their information needs were met,
they benefited from additional training in general problem-solving skills.80

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Third, there are several theory-based, comprehensive interventions that have been developed
and tested in randomized trials. To our knowledge, few, if any, of these interventions have
been translated for or implemented in clinical practice settings. Both researchers and clinicians
need to work together to determine ways to implement efficacious evidence-based
interventions in oncology treatment sites where caregivers can benefit from them. Most of
these evidence-based interventions will not move from efficacy studies (Phase III) to
effectiveness studies (Phase IV) unless researchers, clinicians, and funding agencies
collaborate to facilitate the implementation of these studies in practice settings.
Directions for Future Research
Based on the findings from this meta-analysis, we have identified several areas in need of
further research.

Future studies need to have more racial, cultural, and socioeconomic diversity. In this
meta-analysis, 16% of the participants were self-identified as members of a minority
group and only two studies were tailored for a particular cultural or racial group.49,
68

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More studies need to examine caregivers self-care behaviors and the physical health
outcomes that follow. Caregivers often place patients needs above their own needs
and as a result spend less time on health promotion activities for themselves such as
exercise or cancer screening. Over time this could have negative consequences on
caregivers health.

There is a need for more research studies that identify patients and caregivers who
are at higher risk for poorer outcomes, so that interventions can be targeted to them.
While all caregivers should be provided with basic caregiving information as part of
a comprehensive cancer care program, every effort should be made to identify those
families at greater risk that are more likely to benefit the most from additional
interventions.

There is a need for large, well-funded, multisite studies to obtain larger samples of
patients and caregivers in a reasonable amount of time, with long-term post
intervention follow-up, and with a greater ability to generalize findings. Conducting
intervention studies with cancer patients and their family caregivers is challenging
and requires the support of clinicians, who can inform potential participants about
available studies and encourage them to participate in them. These studies also need

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to be integrated into clinical care to determine how effectively they can be


implemented in practice settings.

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Studies are also needed that assess intervention costs and their possible effect on
health care resources. Of the 29 studies we examined, none of them addressed cost
issues. More research is needed on how efficacious interventions can be delivered in
a cost-effective manner.

There is a need for studies that assess the potential for using technology to deliver
effective interventions to caregivers. In our search of the literature for this metaanalysis, we found no published studies using the Web with our target population.
This may be an important mode of intervention delivery to consider for future studies.

There is a need to consider the clinical significance of interventions targeting


caregivers of cancer patients in addition to their statistical significance. One major
step in accomplishing this goal is to increase their methodological rigor, by being
equally assured that studies are neither underpowered nor overpowered. A second
step is to obtain consensus among health professionals from multiple disciplines on
a set of core outcomes that are important to include and measure in all caregiver
studies.80 Finally, consensus also is needed regarding the importance of the
relationship between clinical and statistical significance, because even if effects are
small, they may be important and associated with clinically meaningful outcomes.

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In summary, findings from this meta-analysis indicate that interventions targeted to family
caregivers of cancer patients can have a positive effect on many important caregiver outcomes.
Researchers and clinicians need to work together to find ways to deliver research-tested
interventions to patients and their caregivers so that both can cope effectively with the demands
of cancer, and maintain their quality of life.

Acknowledgments
Barbara Given PhD, RN, FAAN College of Nursing, Michigan State University; Charles W. Given PhD, Department
of Family Practice, Michigan State University; Bernadine Cimprich PhD, RN, FAAN, School of Nursing, University
of Michigan for reviewing the manuscript and offering valuable suggestions.

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FIGURE 1.

Selection Process of Randomized Trials

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FIGURE 2.

Effect Sizes for Caregiving Burden

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FIGURE 3.

Effect Sizes for Caregiving Benefit

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FIGURE 4.

Effect Sizes for Information Needs

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FIGURE 5.

Effect Sizes for Coping

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FIGURE 6.

Effect Sizes for Caregiver Self-efficacy

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Northouse et al.

Page 24

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FIGURE 7.

Effect Sizes for Physical Functioning

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Northouse et al.

Page 25

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FIGURE 8.

Effect Sizes for Distress and Anxiety

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Northouse et al.

Page 26

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FIGURE 9.

Effect Sizes for Depression

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Northouse et al.

Page 27

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FIGURE 10.

Effect Sizes for Marital-Family Relationships

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Northouse et al.

Page 28

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FIGURE 11.

NIH-PA Author Manuscript

Effect Sizes for Social Functioning

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CA Cancer J Clin. Author manuscript; available in PMC 2011 September 1.

Northouse et al.

Page 29

TABLE 1

Theoretical Framework for Organizing Data into Domains and Outcomes

NIH-PA Author Manuscript

Domain

Illness Appraisal Factors

Coping Resources

Quality of Life

Outcomes

Caregiving burden

Coping strategies

Physical functioning

Caregiving benefit

Caregiver self-efficacy

Distress and anxiety

Information needs

Depression
Marital-family relationships
Social functioning

NIH-PA Author Manuscript


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NIH-PA Author Manuscript

CA Cancer J Clin. Author manuscript; available in PMC 2011 September 1.


CG only
CG + Pt
(joint)
Videos,
audiotapes
Printed
materials

4.
5.
6.
7.

A, B, C: 1, 5, 6
Six 75-minute biweekly joint
sessions in therapists office;
homework

C,A, B: 1, 4 (CWC)
Four to six 1-hour CG counseling
sessions in counselors office

cExp Arm I: A: 1, 4, 6*

Blanchard et
al.46
To reduce CGs
distress

Budin et al.47

cExp Arm II: C: 3, 4*


Three 11-min biweekly CG
exercise-related phone calls
*Pts received six calls

Exp Arm I:B, A: 3, 4*


Three 34-min biweekly CG
counseling phone calls
*Pts received six calls

Phone

Group

3.

2.

Skills training

C.
Face-toface

Therapeutic
counseling

B.

1.

Psychoeducational

A.

Intervention Type a
Contacts: # & Length
Location b

Baucom et al.
45
To manage
effects of breast
ca on the marital
relationship

Badger et al.44
To reduce
anxiety,
depression in
breast ca Pts &
CGs
*Interventions
delivered
separately to
CG & Pt

CG = caregivers
Pt = patients

Authors
Primary Goal

About 32 weeks
RNs

6 weeks
Oncology SW

12 weeks
Advanced clinical PSY
doctoral students

6 weeks
Psychiatric RN w/
oncology expertise

RN=Nurse
SW=Social worker
PSY=Psychologist
MD=Physician
RA=Research assistant

Duration of Protocol
Intervener

NIH-PA Author Manuscript

Intervention Protocols for Caregivers of Cancer Patients

Communication
w/health
providers

1, 3

2, 3
CGs apply problem- solving
strategies to manage Pt care
needs

1, 2, 3
Medical education; provide
emotional & Pt- esteem
support

1, 3
Cancer information

Emotional
support

Symptom mgmt

2
3

General
physical care

Patient Caregiving

Teamwork

2
Communication w/Pt

1, 2, 3, 4, 5, 6
Communication for decisionmaking; sharing feelings;
sexual adaptation;

1, 5
Modify role responsibilities

Role transitions

Sexual functioning

Intimacy

Communication

Relationship

Marital/Family Care

Social
support
Spiritual care
Bereavement

6
7
8

1, 4, 6

1, 2, 3, 4, 5, 6
Use problem-solving
skills for self care;
emotional support

2, 3, 4, 5, 9
Skills for mutual
problem-solving;
emotional support; find
meaning

3, 4
Low-impact exercise

2, 3, 4, 6
Managing depression &
anxiety, social support

Accessing
resources

Selfefficacy,
esteem

Emotional
self care

Health self
care

Problemsolving

Coping skills

Caregiver Self Care

Contents of Caregiver Intervention (as specified by investigator)

Stress & coping; crisis intervention

Problem-solving

Cognitive-behavioral approach

None cited

Inter-personal counseling

-Indicates fidelity of intervention


was discussed

Theoretical framework
Fidelity

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TABLE 2
Northouse et al.
Page 30

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A: 2, 4, 6
Six 1.52 hour weekly CG group
sessions in clinical site

A, C: 3, 5* (CST)
Six 1-hour joint phone sessions
*Speakerphones provided for joint
participation

C, A: 1, 4 (CASI)
One 1-hour training session plus
one 1-hour booster session at CGs
choice of locations; practice at
home

B: 1, 5, 7; also interactive art


project
Four weekly couple counseling
sessions in therapists office

A, B: 1, 3, 5, 7
Session(s) in clinical setting w/12
follow-up phone calls (dose
unknown)

A, C: 1, 3, 5, 7 (SNIP)
Eight 1.5-hour weekly joint home
visits alternating w/eight 45-min
joint phone calls

Campbell et al.
49
To enhance selfefficacy & QOL
in AA prostate
ca Pts & spouseCGs

Carter50
To maximize
CGs ability to
improve sleep
quality

Christensen51
To alleviate Pt
& CG
psychosocial
discomfort after
mastectomy

Derdiarian52
To improve Pt
& CG coping
skills;
satisfaction
prior to ca
treatment

CA Cancer J Clin. Author manuscript; available in PMC 2011 September 1.

Giarelli et al.
53
To prepare CG
(& Pt) for
caregiving

8 weeks
Advanced Practice
RNs (APNs)

2 weeks
RAs

4 weeks
PhD SW therapist

4 weeks
Masters RNs

7 weeks on average
Medical PSY

6 weeks
PSY, MD

1, 2, 3
Practical information, skill
training to enhance Pt care

1, 2, 3
Information about disease,
treatment

1, 2, 3
Information re cas physical,
emotional, & social side
effects

1, 2, 3
Medical, psychosocial
information

1,3
All interventions I & II

1,3
Answer Pt-care questions,
facilitate coping, social
support

cExp Arm II: B, C: 3, 4*


Four 12 hour CG phone
counseling calls tailored to phase &
recipient

Exp Arm III: A+B: 1, 4, 6*


Combines Arms I & II (Four video
+ four phone sessions)

Medical information to
facilitate coping & social
support

Patient Caregiving

2, 3, 4, 6
Mutual effects of Pts illness on
marital relationship

1
Information re managing
family concerns

1, 2, 3, 4
Sexual misconception,
facilitate change, reinforce
couples strengths

1, 2, 6
Effects of ca on marital
relationship, communication
skills; plan mutually pleasant
activities

1, 2, 3, 4
Discuss marital relationship,
communication, sexual issues

2
Functional communication

2
Functional communication

Marital/Family Care

2, 3, 4, 6, 9
Manage personal needs,
emotional effects;
resources, referrals

1, 3, 6, 9
Information on selfidentified needs,
concerns re Pts disease;
resource information

3, 4
Self-assess to improve
sleep quality, sleep
hygiene; relaxation,
stimulus control

1, 2, 5
Progressive muscle
relaxation, activity-rest
cycles, cognitive
restructuring

1, 2, 4, 5, 6, 8
Examine CGs fears,
concerns, challenges;
fears of recurrence, death
& dying

All interventions I & II

1, 4, 6, 9
Manage distress by
coping, support, behavior
change1, 4, 6, 9

Coping, psychosocial
support

Caregiver Self Care

Contents of Caregiver Intervention (as specified by investigator)

Four 1-hour CG viewing of


standardized phase-specific videos

Bultz et al.48
To help CGs of
breast ca Pts
manage Pt &
self care,
marital issues

To enhance
biopsychosocial
adjustment of
breast ca Pts &
CGs
*Interventions
delivered
separately to
CG & Pt

Duration of Protocol
Intervener

NIH-PA Author Manuscript

Intervention Type a
Contacts: # & Length
Location b

Labor of caregiving

Psychological stress & coping

Psycho-sexual counseling

Stress & coping; cognitive &


behavioral approaches

Cognitive-behavioral approaches;
cultural-based health disparities

Empirical base

Theoretical framework
Fidelity

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Authors
Primary Goal

Northouse et al.
Page 31

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C, A: 1, 5 plus 3, 4
Three 32-min joint sessions at
clinic alternating w/two 15- min
individual phone calls to CGs only

B: 1, 4
Twelve weekly sessions for CGs w/
therapist

A, C: 2, 5, 6, 7 (SAM)
Six 2-hour weekly couples group
sessions in clinical setting

A: 1, 3, 4, 6, 7
Two 1.5-hour CG home visits (Pt
could be present at CGs request),
one 30-min phone call between
visits

A, C: 1, 3, 5 (SNIP)
Three 1.5-hour joint home visits
alternating w/six 45-min phone
calls

C, A: 1, 5, 6, 7
Three 2090 minute (M = 56 mins)
joint home visits

B: 1, 5 (>1 family member) Four to


eight 90-min family therapy
sessions in clinic or home

A, C: 1, 5; 3, 4
Five 1-hour joint meetings
alternating biweekly w/four 20minute individual CG phone calls

Given et al.54
To enhance
CGs
satisfaction &
skills for
caregiving

Goldberg &
Wool55
Social support
counseling for
CGs of lung ca
Pts

Heinrich &
Schag56
To increase
knowledge,
psychosocial
adjustment, &
daily activities

Hudson et al.57
To prepare CGs
to care for self &
dying Pt

Jepson et al.58
To improve
CGs
psychosocial
status post- ca
Pts surgery

Keefe et al.59
Partner-guided
pain
management for
Pts at end of life

Kissane et al.60
To reduce
distress of
bereavement

CA Cancer J Clin. Author manuscript; available in PMC 2011 September 1.

Kozachik et al.
61
To reduce CG
depression;
enhance

16 weeks
Masters RNs certified
in oncology

918 months (M = 13)


Family SW herapists

14.6 weeks (M = 2)
RN educators

4 weeks
RN w/oncology
expertise

2 weeks
RNs

6 weeks
MD, PSY

12 weeks
1 MSW, 1 PSY

10 weeks
RNs w/oncology
experience

Duration of Protocol
Intervener

1, 2, 3, 5
Identify symptoms &
severity; select care
strategies from
computerized list

3
Identify Pts thoughts &
feelings, provide support

2, 3
CG coaching Pt in use of
behavioral pain relief
strategies

1, 2, 3
Information, skills to care
for Pts health needs;
coordinating care

1, 2, 3
Enhance CGs ability &
skills to assist in Pts
physical & emotional care

2, 3
Medical information; skills
to manage Pt stress (coping,
problem-solving),
relaxation, exercise,
activities

3, 4
Maintain Pts social support
system; encourage Pt
autonomy; advocate for Pt in
health care system

1, 2, 3
Assess CGs negative
reactions to caregiving; plan
& evaluate care strategies

Patient Caregiving

2, 6
Make joint decisions; plan,
evaluate care strategies for both
Pt & CG problems

1, 2, 5, 6
Family cohesion;
communication; handling of
conflict

6
Caregiving as teamwork

1, 2
Increase positively-valued
couple activities; Pt & CG
share ideas, feelings in group
discussion

1, 2, 5
Encourage family & social
communication

2
Communication as a device to
help CG assist in Pt care

Marital/Family Care

2, 3, 4, 5, 9
Acquire problem-solving
skills, self-efficacy for Pt
care; use available
resources

4, 8
Examine thoughts &
feelings, anticipate
bereavement distress

1, 3, 4, 5
Apply learned skills for
self-care, greater
confidence in caregiving

2, 3, 4, 9
Assess Pt & own personal
needs; use resources; care
for own health problems

3, 4, 5, 6, 7, 8, 9
Diet, exercise, rest; use of
social, spiritual, health
care resources; optimism;
emotional, bereavement
support

1, 2, 3, 4
Apply information,
skills, & activities to
enhance self care

1, 4, 5, 6, 8
Manage distress, increase
competence, deal w/
grief, anticipatory
mourning

1, 2, 3, 4, 5
Coping, problem-solving
skills, enhance selfefficacy; cognitive
reframing, self-care

Caregiver Self Care

Contents of Caregiver Intervention (as specified by investigator)

NIH-PA Author Manuscript

Intervention Type a
Contacts: # & Length
Location b

Family care model

Family-focused grief therapy

None cited

None cited

Stress & coping

Cognitive-behavioral approaches

Social support systems

Cognitive-behavioral

Theoretical framework
Fidelity

NIH-PA Author Manuscript

Authors
Primary Goal

Northouse et al.
Page 32

NIH-PA Author Manuscript

CA Cancer J Clin. Author manuscript; available in PMC 2011 September 1.

A, C: 1, 3, 5, 7 (SNIP)
Eight 1.5-hour joint weekly home
visits alternating w/eight 45-min
weekly phone calls

Exp Arm I:C: 1, 4

McMillan et al.
67

6 weeks
Multidisciplinary team
(not cancer-specific)

cExp Arm II:A: 1, 5 (SHC)


Six (on average) weekly home
visits

McCorkle et al.
66
To improve
spouse-CGs
depression,
marital function
w/
prostatectomy
Pts

124 weeks
(M = 12)
Masters RNs w/
expertise in terminal ca
care

Exp Arm I:A, C: 1, 3, 5, 7 (OHC)


Ten 70-min weekly home visits (on
average) plus weekly follow-up
phone calls

McCorkle et al.
65
To enhance
CGs
knowledge &
skills in care of
terminally ill
lung ca Pts;
anticipate
distress of
bereavement

1, 2, 3
Assist Pt to manage care
needs

2, 3

1.2 weeks

2, 4
Information re Pts
medications, when to call
MD; communicate w/health
providers

1, 2, 3, 4
Information, skills to help
manage Pts care needs;
provide emotional support,
communicate w/health
providers

1,2, 3
Information re diagnosis,
treatment, good nutrition,
providing support

2, 3, 4
Information, skills to care,
support Pt; communicate w/
health providers; plan,
evaluate care strategies

Patient Caregiving

1, 6

1, 4, 5, 6
Examine sexual functioning
issues resulting from side
effects of surgery

2
Facilitate marital & family
communication

2, 5, 6
Facilitate marital & family
communication to fulfill Pts
role & responsibilities;
teamwork

1, 2, 3, 4
Maintaining good
communication, intimacy;
dealing w/sexual concerns

1, 5, 6
Manage effects of role strain &
CG burden on relationship

1, 2, 3, 5, 6
Mutual support to reduce sense
of inequity; enhance
relationship quality & wellbeing

Marital/Family Care

1, 2, 4, 5, 9

1, 2, 3, 4, 6, 9
Learn coping & problemsolving skills, Pt care
skills, assess needs,
resources

8, 9
Offer bereavement
support; information re
available resources

2, 4, 6, 8, 9
(Referral to own health
care provider to manage
self- care needs); use of
resources; receive
emotional, bereavement
support

1, 6, 8
Stress management &
coping skills training;
social support;
survivorship

1, 2, 3, 4, 5, 6
Apply skills to care for
self, increase selfconfidence, maintain
social support

Caregiver Self Care

Contents of Caregiver Intervention (as specified by investigator)

8 weeks
Advanced Practice
RNs

6 weeks
MD, MSW, PSY, &
nutritionist

A, C: 2, 4, 7
Six 1-hour weekly CG group
sessions in clinical setting

Manne et al.64
To reduce CGs
distress &
increase coping,
personal
growth, &
marital
communication

20 weeks
RNs

8 weeks
PSYs

C, A: 1, 3, 5
Five monthly joint sessions at
clinical site alternated w/five
monthly CG phone calls.

B: 1, 5, 7
Five 90-minute couple counseling
sessions

Kurtz et al.63
To reduce CG &
Pt depression,
distress by
teaching skills
to manage
symptoms

Kuijer et al.62
To restore
couples
perception of
equity &
exchange of
support

problemsolving skills

Duration of Protocol
Intervener

NIH-PA Author Manuscript

Intervention Type a
Contacts: # & Length
Location b

Family COPE model

Chronic illness & the life cycle

Existential plight; chronic illness


trajectory

Stress-coping; cognitive & social


processing theories

Cognitive-behavioral

Cognitive-behavioral; equity theory

Theoretical framework
Fidelity

NIH-PA Author Manuscript

Authors
Primary Goal

Northouse et al.
Page 33

NIH-PA Author Manuscript

CA Cancer J Clin. Author manuscript; available in PMC 2011 September 1.

A, C: 1, 3, 5, 6, 7 (FOCUS)
Three 90-min monthly joint home
visits alternating w/two 30-min
joint phone calls

Exp Arm I: C, A, B: 1, 3, 5, 7
(CanCOPE)*
Five 2-hour joint home visits w/two
30-min phone calls

Northouse et
al.70
To improve
appraisal,
coping,
symptom
distress & QOL
in prostate ca
Pts & spouseCGs

Scott et al.71
To enhance
couple
communication,
coping, Pt body
image, sexual
adjustment in
female ca Pts &
their intimate
partners

Walsh et al.72
To increase
support for atrisk CGs of Pts
w/advanced ca

A, C: 1, 3, 5, 6, 7 (FOCUS)
Three 90-min monthly joint home
visits (initial phase); Two 30-min
monthly joint phone calls (booster
phase)

Northouse et
al.69
To improve
psychosocial &
QOL outcomes
in Pts w/
advanced breast
ca & CGs

A, B: 1, 4
Six 50-min weekly CG home
visits* (or in other location where
privacy could be maintained)
*Phone calls occasionally
substituted for home visit

cExp Arm II: C, A, B: 1, 3, 4 (Pt


only), 7
Four 2-hour Pt (individual) home
visits w/two 30-min Pt phone calls

A, C: 1, 5, 6, 7; (included many
Hawaiian traditions) Six 2-hour
family sessions held at
participants preference

cExp Arm II:B: 1, 4


Three 1-hour CG sessions to
provide individual support

Three 1-hour CG sessions to teach


problem-solving methods

Mokuau et al.
68
To increase
knowledge,
skills of family
members of
breast ca Pts

To improve
CGs QOL,
burden, coping,
mastery
assisting Pt in
hospice care

6 weeks
RN & SW (team of CG
advisors)

7 weeks + one 6-mo


follow-up session
Female PSYs

13 weeks
Masters RNs

Home visits 13 weeks;


phone calls during next
13 weeks
Masters RNs

13 weeks
Masters SWs in teams
of two

RNs & home health


aides (not employed at
hospice site)

Duration of Protocol
Intervener

1, 2, 3, 4 S
Supportive marital
communication, joint coping,
sexual counseling

2, 3, 4, 5, 6
Open communication; mutual
support, healthy life-style
behaviors; maintain optimism
& manage uncertainty as a team

1, 2, 3, 4, 5, 6
Improve family functioning,
open communication, marital
relationship; adapt to role
changes; work as a team

1, 2, 5
Family teamwork to meet Pt
care needs & share family
chores

1
Discussing relationship w/Pt

Involve Pt in care planning;


work as a team

Marital/Family Care

1, 2, 4, 5
Coping & problemsolving skills; social
support training;
counseling

1, 2, 3, 4, 5, 9
Maintain self health,
effective coping w/stress;
maintain social support
system; use available
resources effectively

1, 2, 3, 4, 5, 6, 9
Manage self health;
effective coping w/stress;
receive emotional
support from Pt, manage
uncertainty, use of
community/social
resources

1, 2, 5, 7, 9
Use of conference phone
& computer access for ca
information

3
Discussing CGs fears &
feelings

Creativity in problemsolving, optimism, use of


respite care resources

Caregiver Self Care

3, 4, 6, 8, 9
Attention to own care
needs; respite; future
planning, survivor
benefits & finances;
maintain social
networks; bereavement

CGs received no intervention in this study arm, but provided data

1, 2, 3
Information re caring for
Pts needs; enhancing Pt
body image

1, 2, 3
Assist Pt to manage care
needs, provide support;
communicate w/health
providers

1, 2, 3, 4
Manage Pts care needs;
provide emotional support;
assist Pt to manage
uncertainty, maintain
optimistic attitude

1, 2, 3, 4
Assist Pt to manage care
needs; communicate w/
health care providers

Plan caregiving goals;


receive expert information
re assessing symptoms

Patient Caregiving

Contents of Caregiver Intervention (as specified by investigator)

NIH-PA Author Manuscript

Intervention Type a
Contacts: # & Length
Location b

None cited

Social- cognitive processing model


of emotional adjustment to ca;
Coping theory

Stress & Coping

Stress & coping

Culturally sensitive care

Theoretical framework
Fidelity

NIH-PA Author Manuscript

Authors
Primary Goal

Northouse et al.
Page 34

CA Cancer J Clin. Author manuscript; available in PMC 2011 September 1.

All available information is reported; any missing information is unknown

support; social service


resources

Caregiver Self Care

Theoretical framework
Fidelity

NOTE: The coding for Column 2 consists of 4 parts: A, B, C = types of interventions; 1, 2, 3 = mode(s) of presentation; 4, 5 = Caregiver alone (4) or jointly w/the Patient (5); 6, 7 = types of supplementary
materials used. Thus, the string of codes for any particular intervention can be read like a sentence (e.g., looking above at the Walsh et al. study, it is described as primarily a psychoeducational intervention
(A) w/secondary elements of therapeutic counseling (B), presented face-to-face (1) to the CG alone (4).

c
Experimental arm excluded from multi-arm studies (i.e., not included in meta-analysis)

Marital/Family Care

Contents of Caregiver Intervention (as specified by investigator)


Patient Caregiving

Primary intervention focus is shown in bold type; secondary element(s) shown in regular type

NIH-PA Author Manuscript


Duration of Protocol
Intervener

NIH-PA Author Manuscript

Intervention Type a
Contacts: # & Length
Location b

NIH-PA Author Manuscript

Authors
Primary Goal

Northouse et al.
Page 35

NIH-PA Author Manuscript


86

184

34
40
35

20
60

116

237

48

28

106

Blanchard, et al.46

Budin et al.47

Bultz, et al.48

Campbell et al.49

Carter50

Christensen51

Derdiarian52

Giarelli et al.53

Given et al.54

Goldberg & Wool55

Heinrich & Schag56

Hudson et al.57

Badger et al.44

14

97

Authors/Year

Baucom et al.45

Caregivers
Enrolled
& w/
Baseline
Data

CA Cancer J Clin. Author manuscript; available in PMC 2011 September 1.


30%

78%

65%

39%

Unknown

Unknown

Unknown

100%*

25%

32%

36%

27%

13%

84%

Caregiver Enrollment Rate

Characteristics of Family Caregivers of Cancer

67% Spouse
16% Adult children

100% Spouse

73% Spouse
17% Adult children
10% Other

65% Spouse
35% Other

100% Spouse

100% Spouse

100% Spouse

57%
Spouse
30% Adult children
13% Other

100% Spouse

100% Spouse

54% Spouse/partner
12% Children
34% Other

100% Spouse

100% Spouse

77% Spouse/partner
23% Other

Patient-Caregiver Relationship

Heterogeneous
Advanced stage

Heterogeneous
Stage not specified

Lung
Stage not specified

Heterogeneous
33% Early stage
67% Advanced stage

Prostate
Early stage

Heterogeneous
Stage I-IV

Breast
Localized stage

Heterogeneous
Advanced stage

Prostate
Early stage

Breast
Stage I-II

Breast
Stage 0-III

Heterogeneous
Stage not specified

Breast
Stage I-II

Breast
Stage I-III

Patients Cancer
Type & Stage

NIH-PA Author Manuscript


TABLE 3

65% Female

NA

83% Female

54% Female

100% Female

100% Female

100% Male

63% Female

100% Female

100% Male

58% Male

52% Male

100% Male

74% Male

Gender

74% Australian26% Other

NA

Most Caucasian

NA

87% Caucasian13% Other

NA

NA

80% Caucasian10%
African American10%
Hispanic

100% African American

NA

70% Caucasian
13% African American
7% Hispanic
10% Other

97% Caucasian3% Other

86% Caucasian
14% Other

87% Caucasian
11% Hispanic
2% Other

Race

60.8

n/a

49.6

54.9

54.2

41.0

39.7

53.0

58.7

51.0

51.6

52.3

50.0

51.7

Age (Yr)

Caregivers Demographic Characteristics

57%

11%

52%

31%

17%

Unknown

0%

14%

25%

6%

32%

23%

43%

12%

Caregiver Attritionb

NIH-PA Author Manuscript

Patientsa

Northouse et al.
Page 36

161

82

282*

120

59

237

68

91

126

329
18

189

263

94

Jepson et al.58

Keefe et al.59

Kissane et al.60

Kozachik et al.61

Kuijer et al. 62

Kurtz et al. 63

Manne et al. 64

McCorkle et al. 65

McCorkle et al. 66

McMillan et al. 67

Mokuau et al. 68

Northouse et al. 69

Northouse et al. 70

Scott et al. 71

NIH-PA Author Manuscript

CA Cancer J Clin. Author manuscript; available in PMC 2011 September 1.


90%

69%

80%

83%

93%

93%

72%

57%

43%

94%

53%

73%

47%

75%

Caregiver Enrollment Rate

100% Spouse/partner

100% Spouse

62% Spouse
16% Adult children
22% Other

Spouse
Adult children
% unknown

Unknown

100% Spouse

100% Spouse

100% Spouse

100% Spouse/partner

100% Spouse

100% Spouse/partner*

28% Partner
59% Children
3% Other

76% Spouse
14% Adult children
10% Other

88% Spouse
8% Adult children
4% Other

17% Other

Patient-Caregiver Relationship

Breast &
Gynecological

Prostate
65% Localized stage
21% Advanced stage
14% Recurrent stage

Breast
Advanced stage

Heterogeneous
Stage not specified

Mixed
Advanced stage

Prostate
Early Stage

Lung
Terminal stage

Prostate
80% Stage I-II
18% Stage III-IV

Heterogeneous
33% Early stage
67% Advanced stage

Heterogeneous
56% Advanced stage

Heterogeneous
48% Stage I-II
52% Stage III-IV

Heterogeneous
Advanced stage

Heterogeneous
Advanced stage

Heterogeneous
35% Stage III-IV

Patients Cancer
Type & Stage

NIH-PA Author Manuscript

Authors/Year

100% Male

99% Female*

69% Male*

50% Female

85% Female

100% Female

Most Female

100% Female

53% Female

69% Female

51% Female

53% Female

62% Female

68% Female

Gender

98% Caucasian

84% Caucasian
14% African American
2% Other

77% Caucasian
19% African American
4% Other

100% Hawaiian

NA

85% Caucasian
15% Other

NA

84% Caucasian
13% African American
3% Other

92% Caucasian
5% African American
3% Other

NA

NA

NA

79% Caucasian
20% African American
1% Other

85% Caucasian15% Other

Race

53.0

59.0

52.0

54.0

61.5

56.0

58.0

59.6

55.2

49.5

52.1

36.6

58.5

62.3

Age (Yr)

Caregivers Demographic Characteristics

20%

17%

26%

0%

69%

15%

49%

12%

41%

34%

27%

24%

28%

26%

Caregiver Attritionb

NIH-PA Author Manuscript

Caregivers
Enrolled
& w/
Baseline
Data

Northouse et al.
Page 37

Walsh 72

271

Information obtained from authors

NIH-PA Author Manuscript


64% Spouse
25% Children
11% Other

Patient-Caregiver Relationship

Heterogeneous
Terminal stage

Stage I-III

Patients Cancer
Type & Stage

Caregiver attrition was based on the number of caregivers who dropped out of the study between baseline and last follow-up session.

When discrepancies in sample size existed within an article, the sample size used was based on the analysis section of the article.

CA Cancer J Clin. Author manuscript; available in PMC 2011 September 1.

68%

Caregiver Enrollment Rate

NIH-PA Author Manuscript

Authors/Year

79% Female

Gender

86% Caucasian
14% Other

Race

56.3

Age (Yr)

Caregivers Demographic Characteristics

55%

Caregiver Attritionb

NIH-PA Author Manuscript

Caregivers
Enrolled
& w/
Baseline
Data

Northouse et al.
Page 38

NIH-PA Author Manuscript

NIH-PA Author Manuscript


# of Trials

>6 months

3.16 months

>6 months

4
2

3.16 months

>6 months

CA Cancer J Clin. Author manuscript; available in PMC 2011 September 1.


1

>6 months

03 months

Physical Functioning:
7

3.16 months

QUALITY OF LIFE

03 months

Caregiver Self-Efficacy:

10

03 months

Coping Strategies:

COPING RESOURCES

03 months

Information Needs:

757

218

532

757

267

477

790

103

14

3.16 months

>6 months

224

380

218

714

1172

# of CGs

03 months

Caregiving Benefit:

11

3.16 months

03 months

Caregiving Burden:

ILLNESS APPRAISAL FACTORS

Domains/Outcomes

0.11 (0.05 to 0.27)

0.29 (0.03 to 0.56)*

0.20 (0.03 to 0.37)*

0.25 (0.03 to 0.47)*

0.35 (0.10 to 0.58)*

0.20 (0.02 to 0.38)*

0.47 (0.16 to 0.78)**

1.36 (0.92 to 1.77)**

0.48 (0.53 to 1.49)

0.31 (0.02 to 0.61)*

0.17 (0.13 to 0.46)

0.08 (0.19 to 0.34)

0.10 (0.04 to 0.25)

0.22 (0.08 to 0.35)**

Pooled Effect Size Hedges g (95% CI)

Pooled Effect Sizes of Outcomes for Caregivers of Cancer Patients

6.98

0.47

14.24*

1.12

1.96

37.64**

1.91

1.16

6.87

0.65

13.15

Q for Heterogeneity

4.88*

0.38

1.49

3.92*

1.62

7.62*

0.18

0.42

1.77

Eggers t-test for Publication Bias

NIH-PA Author Manuscript

TABLE 4
Northouse et al.
Page 39

>6 months

8
5

3.16 months

>6 months

4
6
2

03 months

3.16 months

>6 months

Social Functioning:

10

03 months

Marital-Family Relationships:

p<0.001

**

137

416

367

481

782

840

295

11

3.16 months

>6 months

1,133

16

1,315

447

882

1,119

278

706

03 months

Depression:

11

3.16 months

>6 months

16

03 months

Distress and Anxiety:

3.16 months

p<0.05

NIH-PA Author Manuscript


# of CGs

0.39 (0.03 to 0.74)*

0.12 (0.06 to 0.31)


1.06

1.67

0.30

11.63*

0.04 (0.38 to 0.31)

0.14 (0.34 to 0.07)

7.29

0.13 (0.00 to 0.28)*

13.78

6.62

0.03 (0.38 to 0.33)

0.20 (0.02 to 0.38)*

8.23

18.52

6.46

6.40

6.30

0.92

6.88

Q for Heterogeneity

0.06 (0.05 to 0.18)

0.06 (0.06 to 0.18)

0.29 (0.06 to 0.51)*

0.16 (0.03 to 0.29)*

0.20 (0.08 to 0.32)*

0.26 (0.02 to 0.49)*

0.22 (0.04 to 0.41)*

Pooled Effect Size Hedges g (95% CI)

NIH-PA Author Manuscript

# of Trials

1.30

1.00

0.75

0.63

0.39

0.38

0.12

1.17

1.46

0.53

0.07

1.81

Eggers t-test for Publication Bias

NIH-PA Author Manuscript

Domains/Outcomes

Northouse et al.
Page 40

CA Cancer J Clin. Author manuscript; available in PMC 2011 September 1.

Northouse et al.

Page 41

TABLE 5

Moderator Analyses

NIH-PA Author Manuscript

Outcomes at Initial Follow up and Moderators

# of Trials

# of CGs

11

1192

Pooled Effect Size Hedges g (95% CI)

Q for Heterogeneity

0.08 (0.13 to 0.02)*

7.17**

Caregiving Burden
# Intervention sessions (M=5.3)
Caregiving Benefit
Participants

4.77*

CGs only

135

0.44 (0.10 to 0.77)*

0.83

CGs+Pts

245

0.03 (0.28 to 0.22)

1.27

Coping Strategies
Mode of Delivery

10.23*

NIH-PA Author Manuscript

Face-to-Face

78

1.06 (0.42 to 1.71)**

0.60

Group

85

1.01 (0.39 to 1.63)*

1.89

Mixed

444

0.07 (0.07 to 1.43)

8.63*

# Intervention hours (M=7.0)

730

0.08 (0.00 to 0.17)*

3.66*

# Intervention sessions (M=5.2)

730

0.23 (0.04 to 0.42)*

5.42*

11

1448

0.05 (0.08 to 0.02)*

11.19**

12

942

0.04 (0.08 to 0.001)*

4.09*

Depression
# Intervention sessions (M=6.5)
Marital-Family Relationships
# Intervention sessions (M=7.2)
*

p<0.05

**

p<0.001

NIH-PA Author Manuscript


CA Cancer J Clin. Author manuscript; available in PMC 2011 September 1.

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